A Parent Perspective: Interview with Jo

My son, Ben, is 12 and I knew very little about disabled people when he was born. My experience of being his mother has been a rapid education in the issues surrounding disability. I find it helpful and interesting to read stories about other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Jo. Jo’s eldest son is disabled and her personal experience motivated her to look at the wellbeing of parent carers in her professional work as a psychologist and writer. I loved talking to Jo about how she’s balanced working and caring over the years, which I think is a familiar challenge to so many of us, and how she’s making sure her research is useful to parent carers.

Could you describe your family?

I live with my husband and three sons. My eldest is 14, and then I have a 13 year old and a nearly 10 year old, and we live in north London. I often describe our family as quirky which I’ve come to embrace.

My eldest son is disabled – he has cerebral palsy, learning disability and autism. He’s in a good place at the moment. His sense of humour has come out – he’s discovered some swear words that he’ll suddenly shout out at tea time and I find very funny (and he knows he’s being cheeky). I don’t want to undermine how difficult it has been to get this good place, so I appreciate and enjoy it, but it can feel precarious.

What are your son’s favourite things?

He is happy and really settled in a special school. He loves pizza and chocolate cake, and transport. Once a year I take him away on a train and we went to York in the summer which was special. He sits on the train and shouts ‘All aboard!’ which makes me chuckle. He loves being out and about, for coffee and a cake, to sit on the bus.

In the house, and during the school holidays, it’s quite difficult to entertain him other than TV, iPad, iPod. He likes the trampoline, pacing around. He used to be absolutely terrified of dogs and it was getting to the point we couldn’t go to our local park because he’d scream or run into the road when he saw a dog. But we got a dog three years ago and she’s been incredible, and then we’ve just got a new puppy who we hope will be more playful and interactive. My son loves throwing a ball or a stick for the dogs, and they have now become a big part of his everyday life. He gives them fresh water, puts their food out. He’s in charge of letting them in and out of the garden and they have cured him of his phobia.

How does his disability affect his day-to-day life?

He is very mobile and walks and runs around. His memory is not great so we break things down for him with lots of repetition. That can be quite hard when you’re very tired. His speech is quite affected. Something I found really hard to get my head around with brain injury is that some days it’s like he’s firing on all cylinders – he’s funny and fast, tells my husband he’s going to put custard in his slippers – and it feels like this is him. Then another day he won’t respond – he’ll be staring out the window and it’s like the neurons just aren’t connecting in the same way. I think some of it is tiredness or when he’s coming down with illness. I’ve learned over many years that when he’s getting ill he has a couple of weeks of feeling grotty but it doesn’t show, so I wonder why he’s being so irritable and then it all comes out and he’s lying on the sofa and needing me.

It was interesting during lockdown that he was so well and his behaviour was amazing. It was only when I went to a training session a few years ago that I heard someone say that people with learning disabilities can be more prone to illness, and illness can really affect behaviour. I sometimes feel guilty for not realising these things sooner. You need to know these things to empower yourself, and also to know that some changes are temporary which makes difficult periods more bearable.

Your two eldest sons are quite close together in age. What were their early years like?

After my eldest son was born we were so delighted he had survived following a traumatic birth and we didn’t fully have an idea of what his diagnosis meant for him. Then when my second son was born it was really tough because it was when some of my eldest son’s difficulties became more apparent, when he was 18 months old. I was full of hormones, and I couldn’t recover from the birth with two kids under two. I had some difficulties trusting other people to look after my eldest son, which may have been the case anyway but was exacerbated by his difficult birth, and childcare was expensive so I didn’t get enough support. I remember I had to put my second son on a chair on the sofa, with a footstool in front, to stop my eldest son getting to him and scratching his face. I’d found a way that kept everyone safe, but the health visitor came round and said I couldn’t put a baby in a chair up on a raised surface. It’s difficult when people come into your house and make comments without having an alternative solution. You are quite exposed when you have a baby anyway, but when you have a disabled child that is magnified – the number of people coming, looking, commenting, telling, advising. It can be quite disheartening as a parent. You’re having to prioritise what’s the most important thing at the moment. That’s why parent carers have such amazing skills.

How did having your eldest child affect your career?

I was a psychologist in primary care in the NHS before I had children. After my eldest son was born it was just about manageable, but then his appointments really increased and I had my second son. My eldest was getting ill a lot and there was a lack of flexibility from my employers and it became too difficult. It was a really hard decision to leave my job because I’d worked really hard for it. I know lots of other parent carers have this difficult decision to make – you like your work and it gives you purpose and meaning, but then it adds to the stress so much that it becomes untenable.

I gave up work for a bit, and then I started working in counselling for a charity supporting male survivors of sexual abuse. The team that I worked with and the work I did there was incredible, but I kept coming back to emotional wellbeing in parent carers and wondering why no one was talking about it. It felt like a hidden thing that wasn’t acknowledged because everything is about the child. I was mulling this over for a long time before I decided to go back to do a Doctorate and research that topic. I started my Doctorate when my eldest son was 10 and it took me for four years.

Before that I had set up my website Affinity Hub (www.affinityhub.uk) to signpost to emotional support because I was hearing anecdotes about general counsellors not really getting what parent carers needed and I thought there must be some people with expertise in this area. I wrote a few articles for journals in therapy and counselling and found counsellors that were often parent carers as well, or had worked in the field for a long time and really got it. I also did a brief survey on my website because I was curious about how parent carers were feeling. The response I got to that drove my desire to do the doctoral research, which then fed into my book Day by Day: Emotional Wellbeing in Parents of Disabled Children which was published earlier this year.

What did you find in your research?

To feel well, you want to feel like you have some control over your life and that came through really strongly in my research. The importance of connecting with positive other people as well and how for some people their family or friends could be such a strong support and for others those were the very people that had really let them down. The importance of finding other parent carers, which was not surprising but so strong. Also the importance of the connection, the love and strength of feeling that parent carers have towards their child. I think a lot of parent carers develop an awareness that we don’t have control over life, and it can be difficult at times. There is a kind of a wisdom – you see what’s really important, and that things are fragile and precious.

it was so important to me that something practical came out of my research because having felt quite alone in some of my difficult feelings in the early years, I was shocked at how many studies were out there about risks to mental health for parent carers. I’d never read about these studies and I was a professional in the mental health field. When I found that research I thought I’m not alone. I’m not a failure. It was so powerful, but also made me really angry that it’s not better known. It’s important to me that research gets to the people that need it and I worked not only on my book, but training for professionals and the NHS about how they can better support parent carers.

Has your research made you think you would have done some things differently?

A common theme was guilt, and giving yourself a hard time for things that you could have done differently. I’m reading a lot about self-compassion at the moment and I think it’s so important for parent carers. You’re only human, you can’t know everything, you made the best of things at that time. There are things that I would have done differently, but I try to not give myself a hard time about it now. There are certainly things that I would want to have been different with the support around me, and the support around all parent carers. My big bugbear is acknowledging the emotional impact, which I think is still rare or done very insensitively.

Have you done any research into siblings of disabled children?

A lot of parent carers I spoke to felt that there could be a tendency to overcompensate for siblings. To give them amazing days out and let them get away with things, being desperate to give siblings amazing memories.
I felt guilty for a long time about my middle son because he was born so close to my eldest. I tried to protect him as much as possible but I’m sure it was stressful for him because of some of the behaviours of my eldest son. Now I look back and I don’t know what more I could have done. It was the nature of the experience.

It’s interesting with siblings because they go through phases of getting on. Initially, my eldest and middle were quite close, then my eldest and youngest, and then my youngest and my middle sons. I think you have to remind yourself that those dynamics would be there anyway, disability just adds an extra thing.

When they were all younger and my eldest son disturbed a game, for example, I would say ‘It’s not his fault, he doesn’t understand.’ I was hoping that they would get an understanding of their big brother’s needs. Then I went on a Sibs training course, and one of the things that adult siblings of disabled people reported as hating hearing the most is, ‘Don’t give your brother/sister a hard time because they can’t help it.’ Or ‘it’s not their fault’. So I’ve stopped saying that but it’s an ongoing learning process!  Being a parent is hard, managing all these dynamics, and you never know if you’re making the right decisions at the time. I think it’s important to keep hold of the idea of ‘good enough’ parenting rather than expect perfection. There’s no such thing as a perfect parent, you just try and do your best.

You can find Jo @affinityhub.uk on Instagram, Twitter and Facebook

Jo’s website is here: www.affinityhub.uk

You can order her book Day by Day: Emotional Wellbeing in Parents of Disabled Children here

A Parent Perspective: Interview with Fiona H

My son, Ben, is 11 and my approach to his disability has changed a lot since he was little. I knew very little about disabled people when he was born and my experience of being his mother has been a rapid education in the issues surrounding disability. If I had known then what I know now, I would have done things differently and I would have found it helpful to have read stories of other people with similar experiences.

This is my latest interview in an occasional series – A Parent Perspective – with Fiona who has three sons. Her youngest son, Joel, has just turned 18 and is autistic. I really enjoyed hearing Fiona talk about the dynamics in her family now her children are adults.

Could you describe your family?

I have three sons: Samuel is 24 and he is very close to Joel, my youngest, who just turned 18. My middle son, Ethan, is 20 Ethan is also extremely close to Joel and they have a unique relationship. Joel was originally a twin but I lost the other baby during the pregnancy.

Joel didn’t sleep for the first six years of his life and didn’t meet milestones. He didn’t walk until he was about two and he had very little speech. Because I had two older children I knew there was something going on with him and I took him for an assessment when he was 18 months old. A professor in Glasgow said he thought what happened in the womb had something to do with Joel’s delayed development and he thought there might have been some brain damage.

Joel went to a fantastic special education nursery in Glasgow when he was two and a half, and then to a special ed school because his development was very delayed. His diagnosis was Global Developmental Delay, which is a massive umbrella term that they say when they don’t know what’s wrong.  When we moved up to Dundee, he changed school where he was assessed and eventually given a diagnosis of Autism Spectrum Disorder and Sensory Processing Disorder when he was 13. I didn’t have much support – my family don’t live here and my ex-husband and I split up, so I looked after the boys on my own.

Can you tell us a bit about Joel and what he enjoys?

Joel’s never really played with toys. His favourite thing when he was younger was a taking leaves and branches off trees and bringing them home to demolish, bit by bit, until they were gone. He’s six foot two and very skinny. He was a picky eater but his school have been encouraging him to eat everything. He has a very sweet tooth and he would eat chocolate all day if I let him. He loves music – there’s always music on in every room of the house and the car – and watching films. He’ll watch the same film for months on end and know every line.

His speech is coming along – he can say short sentences now, what he wants or he doesn’t want. He very rarely gets upset, though he bites his fingers when he’s frustrated. He’s good fun. The school describe him as being very gentle. He’s a really sweet boy who is affectionate in his own way.

Is Joel at school or college now?

A few years ago Dundee social services were pushing me towards employing support for Joel directly which I really didn’t want to do. They could offer me all sorts of things in theory, but in reality the funding is not there and I couldn’t bear the thought of Joel having to live with me for the rest of his life.

I wanted Joel to go a Camphill School, which is based on the Steiner method of education, because there was almost nothing for him in Dundee and they do a lot of learning outdoors which he loves. I had three friends help me with the application which took about six months, and we got him in. Dundee fund the place and it’s actually cheaper for Joel to be there than it is for them to offer the services they said they could at home.

The school has seven acres of land and they grow a lot of their own food which the kids are all involved in. Before Joel was going to school and coming home, not seeing any friends out of school. At Camphill he lives in the same house as five other boys, house parents and co workers. He eats almost anything now, which he never did before. He’s learned to ride a bike. The whole ethos of the school is to push the kids to the best of their ability. He has a great life there and is so happy.

How did you explain how Joel was different when the boys were younger?

There’s 21 months between Ethan and Joel. Luckily, Ethan was a very self contained and easy toddler because Joel took up almost all of my time. Samuel was six when Joel was born and he was very helpful. I used to say to the boys that Joel has a different brain to everyone else’s but it’s a very special brain, and they thought that was quite cool. We kind of knew that he was autistic, but we didn’t want to use the word until we knew for sure.

We dealt with things on a day-to-day basis. Every day was different. For the first four months of his life, Joel screamed the house down every time I bathed him. I was googling and it came up with loads of scary stuff, so I just went with my instincts and persevered. I instinctively knew he needed repetition and eventually he loved baths and now he loves swimming.

How quickly did you come to terms with Joel being different?

In my heart of hearts, I knew he was different. I didn’t say anything to anybody, not even my husband at the time, but I just knew from the moment he was born, when he cried for a few seconds and then lay in my arms and looked at me as if to say help. I think I wanted to hide it, keep it to myself, process it, before I could vocalise it to anybody. I’ve heard a lot of parents talk about the grief that they feel for the life they won’t have with their child. Mine wasn’t grief, it was feeling that I needed to prepare myself, pick myself up, dust myself off, then think this is going to be different. I was then able to get him assessed and tell other people.

I accepted it quite quickly. I’m very pragmatic and I thought I am going to deal with this head on. There were so many times that me and the boys would go out somewhere and have to leave early because Joel was having a meltdown. I used to get really embarrassed and upset. By this time, he was nine and tall so I’d have to physically lift him over my shoulder and sometimes people would stare at Joel. I felt like asking them, ‘What is your problem?’ But then there would always be someone who would come over and say, ‘Can I help you?’ There wasn’t much they could do, but the offer was so lovely. It was difficult for me to get the point where I could think I’m not going to make any apologies for Joel. This is my son. I’m taking him out of here for his own safety, not yours and I don’t care what you think.

How have you and Joel adapted to his needs over the years?

When Joel was younger I didn’t look too far ahead to the future. One day at a time. There were some hilarious things, but there were also some really tense and anxious moments. Now it’s just a joy to be with him and it’s not hard work anymore. I still have to monitor him, there’s still a lot of things that need to be done, and I couldn’t leave him on his own. But he’s so much easier. Joel has surprised me every step of the way, so I’ve been fortunate.

Now we can do almost anything as a family with Joel but it’s taken years of repetition. I first met my new partner about eight years ago and he’s a very outdoor person who loves going walking in the hills but Joel used to run off. We almost had a helicopter out once to find him because he went missing. But we kept doing what we were doing until he learned not to go too far ahead and always to wait. Now we’ve climbed three Munros with Joel. He’s so fit and healthy and he’s in his element on walks. His love of the outdoors has reflected on the other two boys.

We can go out for a meal now too, albeit we tend to go to the same sort of places. If we go somewhere new, I’ll prepare him and he’ll always ask for a burger. Until recently, he’d get very upset if there was a baby crying but his school house parents had a baby last year and now just blanks it out. I think I subconsciously decided I wasn’t going to stop doing the things that I like, but try to expose Joel to things slowly. I wouldn’t put him through stress, but we just kept persevering with all sorts of things in a very slow but repetitive way. Now I can take him into almost any situation and he’ll soon tell me if he isn’t happy.

I persevered because I decided that Joel was going to have a really full and interesting life, and I wanted him to experience things. It’s the same at his school now. He learned to ride a bike last year at school and I went cycling with him for the first time this summer through a forest and it was such a lovely experience.

Are there things that you would have done differently?

I don’t think there’s anything I would have done differently with Joel. I didn’t read books about autism, it was all instinct. You feel like you should be doing all these things with your child, but actually you have to go at their pace. I learned that I couldn’t push Joel because he would very soon tell me that he wasn’t happy. I think the only thing I would do differently would be to have spent more time with the other two boys. When we would have to leave a party early I always felt their disappointment really deeply. They never complained, but I still feel guilty about that.

What has having Joel as a brother meant to your other two sons?

All kids are resilient but I think siblings of children with disabilities are even more so. Samuel has this inbuilt sense of responsibility. When he went to university, he phoned me every day for about two months asking how Joel was. I had to tell him that Joel is my responsibility not his. They’re so protective of their sibling.

I think my two other boys are very different to their contemporaries because of Joel. They’re very caring, very compassionate, and very protective of him. I have a really good relationship with the boys and we are very close. I think Joel has enabled that even more so than if he wasn’t there. My two have been through loads of stuff with Joel and they’re both very well rounded boys. We can’t imagine our lives without Joel. He’s enriched our lives in a way that has been amazing, and we wouldn’t change it.

You can find Fiona on Instagram here, and on Twitter here

Summer skateparks

It is an odd summer. The forced homeschooling of the spring and early summer kind of bled into the summer break, though of course we have now entirely given up on any formal education. There aren’t any of the usual shows or activities running and we aren’t going on a family holiday. The only rhythm to our weeks is that Ben is going to his school playscheme two days a week, which is the same routine as the two days a week he spent at school in early July. Siblings aren’t allowed at the playscheme this year.

Quite a lot of days are spent with the kids doing separate things, with different people, as we try to do things they will each enjoy whilst also finding time to work. It’s not ideal, but it’s inevitable. I feel I have this fantasy version of our days where we do activities together like an idyllic happy, inclusive family but the reality is more like James is working, I’m at a park with Max and Molly, while a carer (the backbone of a successful summer) collects Ben from school.

I think this is probably what always happened, but I’m more aware of it because we’re coming out of shielding Ben where we got used to Ben staying at home while the rest of us occasionally left the house, and I worry it’s the thin end of a wedge – of getting used to not including Ben (even if it’s sometimes for good reasons). I worry that Max and Molly won’t have enough shared experiences with Ben, that Ben will feel left out. But we do do things together, and particularly at the weekend. Mostly parks, with fresh air and easier social distancing. A few weeks ago we went to a skatepark where James rolled Ben up and down the ramps while Max and Molly scooted around, tumbling off occasionally. Ben loves going up steep ramps, tipping his chair right back, and as James pushed him round we could hear Ben squealing in delight.

This week Max wanted to go to a specific skatepark where there is nothing for Ben to do (playgrounds being particularly unwelcoming for wheelchair users in general) and my ankle is not yet up to pushing him up steep ramps while surrounded by skateboarders. I explained this to Ben. ‘Do you want to come with us?’ I asked him and he, quite understandably, said no. Molly wanted to stay with Ben so I took Max alone. I read my book while he skated and it was actually relaxing having only one child to supervise.

Max ended up becoming friends with another boy at the park and I listened to them talking. The other boy was describing his older brother. ‘My older brother is 10,’ Max said. ‘My dad pushes his wheelchair up the ramps when we go to the skatepark all together.’

‘Oh cool,’ the boy replied.

Later that day I was giving Molly a bath while Ben was in his room, just through the open door, with his eyegaze device mounted to this chair. I was washing Molly and not looking at what Ben was doing when I heard his device talking, loudly. Ben had selected the page on his device that has pre-programmed phrases and said ‘Alexa, can you smell that?’

The smart speaker lit up and replied, loudly, ‘Oh my giddy aunt, somebody open a window.’ Molly, Ben and Max, who had been lying on his bed, all collapsed in hysterics. 

Maybe it’s not about the quantity of time the kids spend together, but what we do with it, and skate parks and fart jokes are the bits they’ll remember?

Playscheme

We survived the summer holidays! Nothing brings home the fact you have three children like having them all at home for six weeks . It is inevitably chaotic and puts all other meaningful activity on the backburner, but it’s also fun. We don’t all have to be up and out first thing in the morning, remembering school forms and PE kits. We can go to new places and hang around in the garden.

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The secret to communal happiness for us (me) is to have some structured activities, ideally not involving me, lined up between the museum outings and home-based craft projects. We are fortunate that Ben’s school runs a two week playscheme in the summer, and even more fortunate that we have funding for him to attend for one of those weeks. We pay for him to go for a second week.

Running a playscheme for kids like Ben is not straightforward – you need a suitable building, loads of staff with the right expertise. They are expensive because the ratio of staff to children is high, which means either schools or councils have to subsidise them or they are prohibitively expensive for parents. As a parent, it is difficult to find any holiday activities for our disabled child where we feel confident leaving him in a new place with unfamiliar people. I will only send Ben to this playscheme because it is at his school, staffed by people who work there so know him well – these are people who are used to feeding him through his tube and can communicate with him. It’s not the closest holiday scheme but it is the most appropriate.

So for the last few school holidays Ben has spent a week at this playscheme, which is exactly the kind of age appropriate, fun holiday activity I’m into. What I’m even more keen on is the typical experience of two brothers who are a couple of years apart in age being able to do the same holiday things, at the same time, and that is exactly what this playscheme offers. They welcome non-disabled siblings so this year Max went with Ben for four days.

Hurrah, we all shout! Except (and isn’t there always an ‘except’) we need to work out how to get them to and from a playscheme that is five miles from our house each day. Ben is theoretically provided with transport to do the morning journey for one week, but all of my emails to confirm this have gone unanswered and in the week before the playscheme, I still have no confirmation whether the bus is coming and if Max will be allowed on it. There are some mutterings about insurance (or lack of it) for Max. As always, I eventually call my contact, Ms A, at the private transport provider who are sub-contracted by our local council to take Ben to and from school during the term. She works her magic, and calls me back the following day to say she has confirmed the crew that usually take Ben to school will be there on Monday morning, ready to take Max and Ben.

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I cannot overplay the value of Ms A. After weeks of me emailing and calling social services and the school transport service (as I do in the weeks leading up to every playscheme) and getting precisely nowhere, she smooths the path and makes it work with a driver and escort who are familiar to Ben, and with enthusiasm for Max joining them. People like Ms A are the ones who brighten my days.

And so off they went! Ben went on his own some days, and Max joined him on others. They swam in the hydrotherapy pool and did some DJing. They made spiderman masks and puzzles.

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One day I collected them and a young woman was accompanying the boys down the corridor towards me. I could see they were relaxed and happy. She introduced herself and then, in a low voice so Max couldn’t clearly hear, said what a great brother he was. That he’d been friendly to everyone and helpful to Ben, that he’d made some funny jokes. She said her sister had gone to the school and that was how she had got into helping at playscheme. She seemed like exactly the kind of person I want my kids to hang out with.

This is unusual – it is not standard to have access to a playscheme where you feel really confident people understand and can care for your child, where they will be happy and safe. It is rare for non-disabled siblings to be allowed to join in with these kinds of activities. It is unusual to get funding for a week which includes help with transport to get them there. In fact, in a stunning display of bureaucratic madness, a classmate and friend of Ben’s went to the same playscheme each day but for some unfathomable reason was not allowed to travel on the bus with him. Ben’s bus went past the end of his road each morning without being allowed to pick him up, despite there being room. It was the same bus and crew that normally picks him up for school every morning. I despair.

After two weeks of Max and Ben spending time doing all of the fun the playscheme had to offer, we were ready to spend more time at home. I geared up to organise trips. We did loads of interesting things, but I worked hard. It takes thought and planning to find activities that work for a disabled eight year old, a six and a two year old. Holidays are fun but intense, which is exactly why a playscheme like ours is so valuable.

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There is a temptation to see such playschemes as a luxury but there is literally no other holiday scheme, club or session that Ben can go to without me or a carer. It is entirely appropriate for an eight year old to spend parts of his holiday without his mum, and to have the opportunity to do different things. It’s a crucial part of growing up.

From my perspective it’s brilliant. Ben said that he enjoyed it, and Max asked if he can go every day with Ben next year. I hope so, my boy, I hope so.

 

 

Lucky

IMG_9945I’m trying to institute a new tradition in our house: on each of the children’s birthdays we will all get up and do birthday breakfast, open presents and be generally celebratory, and then I will go back to bed for at least an hour. I think it is a good idea for all of us to remember that this is the anniversary of these kids coming out of my body and that body could do with a little lie down.

Molly’s birthday a few weeks ago was the first time I implemented this brilliant new tradition, and as I was lying down remembering her birth two years ago, I read an article by Chitra Ramaswarmy about her tendency to catastrophise. It was poignant to be reading about how incubating and then having children affects your outlook on life, particularly if one of your children is diagnosed with a disability.

Ramaswarmy experienced a very tough year in which numerous difficult things happened. By its end she had – after a complicated pregnancy – given birth to a healthy baby, her partner and mother had been seriously ill and recovered, and her son had been diagnosed with autism. Was it a year of disaster or, actually, was her family lucky?

Ramaswarmy describes how she is naturally a catastrophist, and inclined to be anxious about the potential for the worst case scenario to occur. She makes the case that the parenting is an antidote to catastrophising:

‘The hard graft and small, pure joys of looking after a baby and a little boy with autism anchor me to the present. The baby keeps me healthy, makes me feel lucky and gives me a constant dose of perspective. She is also exhausting: I am too tired and busy to catastrophise with as much fervour as the habit demands.’

This rings true for me. I am not a catastrophist. My natural tendency is towards slightly anxious optimism. But there is no doubt that I thrive when I am rooted in the present, and nothing keeps you in the present like having a small child, and then another, and then another. It’s not all rose-tinted snuggles – Ben’s early months were difficult for us all and he was frequently made miserable by reflux and feeding difficulties. But my focus on looking after him meant that by the time I looked up and around we had largely weathered the storm.

I went on to have two more babies and, luckily for all of us (and I mean luck, because these things are just a roll of the dice), Max and Molly were babies that were easy to please. I have been largely too busy caring for all of them over the last eight years to spend much time thinking about what might have been, or what might go wrong.

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What really resonated with me was Ramaswarmy’s reaction to her son’s autism diagnosis:

Then there is my brilliantly singular, loving and brave son. Before he was diagnosed with autism (that happened this year, too) I feared this moment: how will we manage? What will we do about school? How will he develop? Is everything going to be OK? The mystery and idiosyncrasy of autism can be frustrating, but it is also a visceral reminder that none of us knows what lies ahead and that compassion is the most powerful weapon against anxiety. So, here I am, living and thriving in the future over which I once catastrophised. And you know what? It is not so scary after all.’

We have had Ben’s birth described as a catastrophe, and in purely medical terms that may be true. But it has not been a catastrophe for our family. Sure there are difficult times, and complications, and we are sometimes sad and frustrated, but there is no catastrophe here. Something that was unfamiliar and therefore terrifying has become normal to us, and with familiarity comes an ease (hugely helped by the privilege of having carers to help and living in an adapted house).

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Over Christmas, all the kids were largely at home every day for two weeks, something that is rare, which meant they spent more time together than usual. Molly can now talk and asked about, or talked about, Ben at least every hour. Ben happily tolerated her climbing on his wheelchair, wiping his face, pressing her cheek into his. Max is currently obsessed with gags about bodily functions and Ben encouraged him by laughing at his poo jokes. Ben let Max play with all of his Christmas presents. Molly clambered on Max and ruined his games and he only snapped after such goading that any jury would be on his side. Ben and Max watched Star Wars for the first time and were scared and excited by the same bits. We went ice skating, for walks, swimming and to the cinema.

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The ‘mystery and idiosyncrasy’ of cerebral palsy can be difficult, but it is also a prompt to live this life that is happening right now, even if it is one that would have counted as a bad outcome at some point. We have three healthy kids, and it’s not so scary after all. Are our family the survivors of a disaster, or are we lucky? Perhaps ask me again when they’re all teenagers, but on the basis of this Christmas we’re extraordinarily lucky.

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Different kids, different kinds of walking

If, like us, you take the view that your child’s disability is part of him and try your hardest not to be negative about it in front of him, how far do you take it?

Molly has just started walking. She’s 13 months and since working out how to take a few steps two weeks ago, she has been practising at every opportunity. She has the typical waddle of a baby and is totally unfazed by dropping to her bum every so often. It’s utterly joyful to watch. If you’re feeling at all depressed by the state of the world, I would recommend spending some time watching a sweet one-year-old walk around like a very tiny drunk.

It feels like a privilege to watch a baby develop these skills and like a small miracle when they keep their balance and toddle off. We, more than most, appreciate the wonder of a baby learning to walk.

And because we are all so amazed we have spent a lot of time talking about it. Visitors comment on it. It can all be a bit of a Molly love-in.

I started to feel a bit uncomfortable about it. How does Ben feel about Molly learning to walk on her own? Is he sad that she is doing something he can’t? When we congratulate Molly does he hear an implicit criticism of him not walking? Was he not really thinking about it much until we all stood around going on and on about how brilliant she was?

I spent a day or two trying not to talk too much about Molly’s walking. Acting as if it was no big deal. Then Max asked me if I was better at maths than him, and I wondered for a moment if I should soften the blow. But then I decided to tell him yes, I was. And I said I’m definitely better at maths than James. I do have an A Level in maths after all and neither of them do.

It struck me that we can’t spend the rest of our lives not being honest about who is good at what, and what one of us can do that the other can’t do as well. Some of our kids will be good at remembering obscure cricketers (James’s genes), some will be good at chemistry (my genes). Pretty unlikely one of them will be talented at everything – so they will all have to experience that irritating feeling of knowing your sibling is better than you at something. In Ben’s case, the nature of his disability is such that he will do lots of amazing things, but some physical skills will constantly elude him. Max and Molly will do things that he can’t.

Obviously, accepting that fact doesn’t mean we need to ask questions like, ‘Isn’t it a shame that Ben can’t walk along walls like Max can?’ (this did actually happen, achieving nothing except drawing everyone’s attention to the disadvantages of being disabled and tainting an otherwise pleasant walk).

I think we have to avoid this kind of direct comparison with all of our children (tricky with Max’s constant questions comparing me to James, James to Superman, Superman to Spiderman, etc etc). Ben won’t walk unaided, but his school annual review lists ‘walking’ (with a supportive frame) under the list of What Ben Likes. Each child is on their own track and we should only compare them against their progress on that track.

Ultimately, I need to chill out and enjoy watching a small child negotiate going downstairs backwards and a four-year-old learn to write. These gross and fine motor skills are easy for parents to take for granted. Do not. See them for the incredible feats of co-ordination that they are. Hold them dear and cherish each milestone.

As a postscript that demonstrates that being an ally to my disabled child is still very much a work in progress, I should mention that I suddenly realised I had written this whole post without asking Ben what he actually thought. So I sat down with him and his eyegaze computer, and modelled what I thought:

‘Molly – walk – great’

I asked him what he thought. He chose:

‘I don’t want to do it’ … ‘Good’

He then got frustrated that I was delaying him listening to The Faraway Tree.

Fair response. Jog on, Mummy, stop asking me stupid questions about my sister walking…

Playing for laughs (via eyegaze)

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I’ve got three kids! I don’t have much time to write blogs! And we have moved house, again, so things are as relaxed as usual round here.

In amongst the chaos and many, many boxes, Ben has been continuing to use his eyegaze computer. It travels to school with him every day and then he uses it at home for a mixture of entertainment and communication. Ben is building skills in using his eyes and navigating around software on a computer, and much of this is by playing games or other activities that he finds motivating. Like everything to do with kids learning something, anything, it’s best done through play as far as I can see.

We have various activities that he enjoys on his computer; his favourites are, unsurprisingly, stories. Some of which are ‘multiple choice’ where he has to pick the right word to continue the pre-programmed story. Others are computer equivalents of audiobooks where the entire text of a novel is on the computer and Ben can choose the story he wants, select the chapter, and then it is read out to him (in stilted computer voice, but he doesn’t seem to mind). Crucially, he has to keep selecting ‘Speak Paragraph’ in order for the story to continue, meaning that he has to engage consistently.

Ben’s current favourite book to read like this is Mr Stink by David Walliams. We have the actual book and read it to him frequently (actually I don’t, generally because I’m often preoccupied with a smaller child, but others do including my dad who assures me it is great and totes emosh). Other times Ben sits at the table reading it to himself via computer. It’s brilliant.

We hadn’t foreseen quite how fantastic the computer is for Ben and Max to use together. The laptop is touchscreen and so they can play games like, for example, Splat the Clown where Ben can splat using his eyes and Max using his finger. There aren’t many activities that they can do together like that, with total parity.

The current hit, however, is the most simple of all. By navigating through various screens within the PODD communication software Ben can get to a page which just has Yes, No and Don’t Know buttons.

Through trying to gauge Ben’s reliability of answering yes or no to questions (Ben doesn’t have a totally reliable yes or no, which is a work in progress for him and something about which I could – and may at some point – write an essay…), James invented a game of asking him sets of related yes/no questions, some of which are totally ridiculous. It is a good way of him practising giving us a clear yes or no when we know he knows the answer. He is definitely making progress on this. The thing we didn’t expect, and which is in danger of slightly undermining our carefully constructed strategy, is that Ben is now giving us the ‘wrong’ answer because it’s funny.

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Oh the laughs! The advent of this game has also coincided with Max hitting the zenith of his life so far where he can successfully make every member of our family laugh. Let me assure you that watching one of your kids make the other laugh is one of life’s pure joys. Watching Eli make BOTH of the other kids laugh is very, very lovely and makes my heart sing. All the feelings.

So it isn’t just James and me asking the yes/no questions, but Max too, and Ben bloody loves it.

Sometimes when Max is asking the questions Ben doesn’t answer. Then while we are waiting, he navigates out of that page which is autonomy in action, and is the physically disabled equivalent of a child wandering off because they have lost interest. He actually then went to a different yes/no page, through a different pathway in the software (which I didn’t know you could do), and then we continued. His ability to do this, without us mediating, is as pleasing to me as all the chuckling.

Ben can cycle!

Milestones are a tricky thing for parents and children like us and Ben. Many of the obvious ones from early childhood never materialised and perhaps some never will. If they do, they will be the result of years of hard work on Ben’s part, considerable therapy input and a lot of patience. This is why we start to talk about ‘inchstones’ (as I have done here) which are no less valuable than the typical milestones. Inchstones recognise the scale of greys that we operate in; Ben can’t sit on his own but has worked up from always being held to being able to sit unsupported for two minutes. In our world, this is brilliant progress.

So there we are, pottering along, Ben working really hard on every aspect of his life, accumulating the inchstones. James and I are a bit distracted by the birth of Molly. It’s mid-winter (albeit one of the mildest winters on record) so Ben hasn’t been going out on his trike that much but we have been trying on the weekends when it isn’t raining…

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And then…

He is off! Riding his trike on his own! An unequivocal milestone! Starting with the odd couple of independent cycles with his legs, building up within minutes to confidently pedalling his legs round and round, spinning in circles. I wasn’t there to start with but James sent me jubilant videos by phone and by the time Molly and I got there Ben was happily cycling around the basketball court. We were all so happy it’s tricky to find a video that doesn’t have someone shrieking in it (I’ve muted the sound to save our blushes) but no-one was more excited than Ben himself.

It’s fantastic.

Because cycling is fun.

Because cycling is what six year olds do.

Because it’s Ben being able to move from one place to another entirely under his own steam which he hardly ever does (he can walk in his walker a bit but it takes a lot of effort and is therefore a bit inconsistent).

Because learning to ride a bike is a bona fide milestone (granted Ben can’t yet steer himself but let’s not quibble over technicalities).

Because Max also learnt to ride his bike in the same week and it’s lovely for brothers to do things together.

Because, above all else, Ben was proud of himself and that is a beautiful thing.

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Just in case it’s a while before another milestone comes along, I’m going to dissect a little how this one came about:

Patience and persistence

We have now had the trike for 15 months. We don’t use it every day but most weeks we have pushed Ben in the trike with his legs getting used to going round. I wrote a blog in April last year about Ben starting to cycle himself but it’s not until now that it’s happened reliably. These things take as long as they take. We must be patient and give Ben the chance to learn and develop the skills – it’s no use expecting things to happen quickly and, equally, just because he hasn’t done something (be it cycling, or learning letters, or using an eyegaze computer) within the arbitrary timescale imposed by some adults, doesn’t mean it won’t happen eventually.

Opportunity

As I wrote about here, we bought the trike privately as there is no statutory funding for such equipment and it was really expensive. Ben therefore had the opportunity to learn how to cycle, little and often, over time with no pressure. Kids like Ben have to be given access to equipment and activities even though things like trikes cost over ten times more than a normal child bike.

Enthusiasm

James and I are pretty good at taking Ben out in the trike but probably the thing that tipped the balance in favour of success was his new nanny/carer. She was with James and Ben the day that he nailed it and was coming to it with a level of enthusiasm which we had probably lost over the last 15 months. Ben really likes her and she was encouraging him to pedal on his own having given him a little push, and off he went. Maybe if James and I had been doing the same old pushing we wouldn’t have realised he was ready to do it on his own. It’s perhaps an obvious point but enthusiastic, skilled carers contribute hugely to Ben’s life.

Self-confidence

Because Ben is so dependent on others to help him with every aspect of his life, it is rare that he can do things on his own or that he can take full credit for them. I love that he was so pleased with himself for cycling, and that all of his patience and determination over the last year has been rewarded. When he went to school after the weekend we recorded a message about it on his communication button and sent video links to his teacher so his whole class watched him cycling. His teacher said he was thrilled when they discussed it and the idea of him sharing his huge achievement with his friends with a big smile on his face makes me feel all warm and fuzzy. The boy deserves a bit of self-esteem.

Siblings

Max learnt to really cycle his pedal bike the day before Ben’s achievement – he had been getting close for a while but required a hand on the back of his neck at all times which limited progress somewhat. It may be coincidence that the boys did it together, but probably not. They really keep an eye on each other and the interaction between them is great for them both – Max wants to do what Ben does and learn what he learns, Ben is encouraged to try games and activities that he wouldn’t tolerate at all if Max wasn’t around. This is the latest in a long list of examples of why having siblings is brilliant for them both.

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Brain surgery

It’s possible that some of this physical progress is down to the stimulators in Ben’s brain. The jury’s out at the moment – let’s wait and see how the rest of the year goes.

So hooray for big orange trikes and small persistent boys.

Sister Molly

Ben and Max’s sister, Molly, is four weeks old. We have survived a month with three children, something which feels like no mean feat.

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That seemed unlikely after our first family outing one week in, when we made it just 100m from our front door before Max broke the rules about how far ahead he was allowed to go on his bike, we shouted, he started crying, Ben started crying because Max was crying, and we all went home. Since then we have managed a family swimming trip and some less eventful local walks. So we might actually be capable of leaving the house as a family of five.

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Both boys have been unbelievably sweet with Molly, and very tolerant of the disruption and imposition involved in having a new-born sister. Through a combination of James having a month off work, numerous carers and family members helping us out, and a baby that sleeps a lot, we have been able to keep things as routine as we can. Ben has shown once again that he can cope with a lot of change and take it in his stride, while Max has been demonstrating his capacity to be both a kind big and little brother. We have all had a lot on, but we’re doing okay

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We do not approach birth lightly. Ben’s disability is because of problems during his birth and we therefore know too much about the risks of things going wrong and having lifelong implications. Max was ill immediately following his birth and had to be admitted to NICU. We sort of assumed that our third baby would end up in NICU, even though a neonatal consultant took the time to explain to us how (very) likely it was that we would have a totally healthy baby.

One of the people who really understood our concerns about the birth of this baby was the obstetrician who we saw throughout this pregnancy and who had previously delivered Max. She is someone we have huge respect for, whose judgement we trust, and who had successfully guided us through my second pregnancy when we were at our most anxious about having another child.

This time we knew in advance that she would not be able to deliver the baby because the elective caesarean was booked during the Christmas period when she would be on holiday. Another obstetrician would do it, it would be fine, we told ourselves. As we prepared on the morning of the birth, getting in to gowns and talking photos of my puffy face, we were calm but nervous. And then she popped her head round the curtain to say hi. Dressed in jeans and tshirt, she was officially on holiday but had come in specifically to do my caesarean section.

That, there, is an emotional moment: the joy of knowing we were in her hands (literally in my case), that our baby had the best possible chance of therefore being fine, that someone so thoroughly understood how difficult this all was for us and had come into work especially.

And then Molly was born, screaming before she was out of my womb, to be immediately declared, with a thumbs up, totally and utterly healthy by the neonatologist we had demanded be on hand to check. No resuscitation, no breathing difficulties, no-one at all worried about anything. She breastfed immediately and, following the facilitation of the obstetrician who knows we spend too much time in hospitals, we were able to go home the following day. You would not believe how uninterested everyone is in a healthy newborn baby – barely any observations, no-one came to check her overnight. If you hadn’t had experiences like ours you would have no idea of the anxiety and stress lurking just across the corridor in the neonatal unit.

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We have now had four weeks of admiring and nurturing little Molly and she is a delight. Third time lucky, we had a baby who didn’t need a canula in their head, or a tube in their nose. She immediately breastfed and sleeps like a champion (just not always at night-time). We take none of this for granted – it is luck of the draw whether you have a baby that does the basics easily or not.

We have not lost and will not lose sight of what a privilege it is to have her here with us, healthy and thriving. Nor what a delight it is to share this baby girl with these boys of mine. We are all lucky.

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How we learn to talk

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I have just done a two day course on a system that I hope will help Ben communicate with us and everyone else.

Communicating is one of Ben’s biggest challenges. He has a lot to say, but his severe disability hampers all of his efforts to tell us what he thinks or wants: he can’t speak, he can’t point, yet he understands a lot.

He has found highly effective ways to get round this day-to-day. He can smile or frown, laugh, shout or show us his bottom lip (the degree of protrusion of the lip is directly proportional to his sadness, on a spectrum that ends in full-blown sobbing). Whingeing indicates dissatisfaction. Looking expectant means ‘I’m interested’.

Ben has the intellect to express far more sophisticated ideas and desires than this – but he needs the tools. So we are working with Ben’s school and a number of speech and language therapists to maximise his opportunities, using Assistive and Alternative Communication, or AAC, the term used to capture a whole range of communication systems that don’t rely solely on speech.

Everyone involved in this effort comes together at a termly review meeting. Last week that involved eight professionals sitting around a table for several hours discussing progress. The combined level of expertise is immense.

And partly because of all of this input, Ben is doing brilliantly. In last week’s meeting someone pointed out that (PROUD MUM ALERT) Ben’s spelling is on a level with his non-disabled peers, so it’s important to not push him too hard. He already has to work much harder than a typical kid to spell consonant-vowel-consonant words but he’s doing it – on an eye-gaze computer or by looking at magnetic letters with Granny.

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The major new communication concept we are introducing to Ben is a PODD book, developed by an Australian woman called Gayle Porter, a minor celebrity on the aided language scene.

PODD books are full of symbols that you point at to express yourself. The ambition is that Ben will eventually be able to show us which symbols he wants to ‘say’ (video of a child using PODD here).

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The success of using aids like PODD books is totally dependent on the expertise of the people surrounding Ben. The course I was on last week was an attempt to increase my confidence and knowledge.

I came away enthused. This has huge potential for Ben. But at the same time I’m nervous, intimidated even. I took away three main insights from the course that really highlighted how big an endeavour this will be:

1. Do we have the stamina to do this justice?

A typical child hears spoken language for at least 18 months before they start talking (over two years if you’re Ben’s brother Max). It therefore follows that we should be modelling use (otherwise called ‘receptive input’) of the PODD book to Ben for at least a year before we expect him to be using it with us. If we were really to mimic normal acquisition of speech, James and I would use it to talk to each other in front of Ben.

At the course we were shown totally inspirational videos of young children communicating, in ways that just would not happen if they hadn’t been taught to use PODD. But … in some of the videos, their mothers (and they were almost exclusively mothers) had modelled use of the PODD books with their children for over a year before their children started interacting with the book.

The level of skill of these women is impressively high – they can navigate expertly from page to page and find symbols really quickly. But even more important is their level of determination. They have dedicated years of their lives to teaching their kids to use PODD books, even when the kids weren’t apparently engaging with them. It is hugely inspiring, but also massively daunting. What if we’re not committed enough? What if we get bored and demoralised, and that means we fail Ben?

2. You can’t learn a language if you’re placed on mute

If you think of the PODD book as Ben’s way of talking, then you have to have it available to him all the time. Otherwise you are effectively silencing his voice. It is close to the equivalent of gagging a verbal child to stop them talking.

We are already guilty of doing this: we introduced Yes and No symbols on Ben’s chair so he can look at these to answer questions. A few weeks ago, the No got puked on, the sellotape got wet and the symbol fell off. Despite daily good intentions, I still haven’t got round to sticking it back on. And I haven’t got round to putting the Yes and No symbols on his wheelchair.

I introduced an opportunity for him to tell me things and them I took it away. Shit.

3. This needs to be a whole family enterprise

On the course I also saw videos of young children using PODD books really competently with their disabled siblings. Max is really trying to work out the rules around him at the moment and where Ben fits into it: for example, ‘big boys’ walk and babies don’t, but Ben is a big boy and doesn’t walk (cue confused/amazed face). We’ve had discussions about whether Ben can hear Max talking, because normally people talk back when they hear you, but Ben doesn’t talk.

Max already talks to Ben on his terms – he says ‘night night’ to Ben every night and waits for Ben to look at him because he knows that’s Ben way of saying goodnight back. When Max asks Ben a question he says, ‘Ben, can I play with your Peppa toy, YES OR NO’!

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Max could easily pick up the way a communication book works (the photo above shows him at 18 months getting interested in one), but only if he sees us using it. We have to normalise it within our family, even if the wider world insists on only speaking to each other.

I should reiterate that I really am filled with enthusiasm – the PODD system has been thoughtfully developed and children exactly like Ben have learnt to use it proficiently. But, oh my goodness, what a weight of expectation. Remind me of this blog in a year, when my enthusiasm for pointing at symbols might be wavering and I need to remember that we knew we were in it for the long haul.